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Columbia Gorge Patient and Clinician Engagement (PaCE) Symposium July 20, 2015

Columbia Gorge Patient and Clinician Engagement (PaCE ......original research into practice and to benefit patient care. (Balas and Boren. Yearbook of Medical Informatics 2000:65-70)

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Page 1: Columbia Gorge Patient and Clinician Engagement (PaCE ......original research into practice and to benefit patient care. (Balas and Boren. Yearbook of Medical Informatics 2000:65-70)

Columbia Gorge Patient and Clinician Engagement (PaCE)

Symposium

July 20, 2015

Page 2: Columbia Gorge Patient and Clinician Engagement (PaCE ......original research into practice and to benefit patient care. (Balas and Boren. Yearbook of Medical Informatics 2000:65-70)

Getting Involved – Research and Advocacy

• Locally – Research Network (Us ) – Columbia Gorge Health Council – Advisory Panel or Board for Clinic or Agency

• Regionally – Oregon Rural Practice-Based Research Network – Study Advisory Groups at OHSU

• Nationally – NAPCRG – Patient Centered Outcomes Research Institute

Page 3: Columbia Gorge Patient and Clinician Engagement (PaCE ......original research into practice and to benefit patient care. (Balas and Boren. Yearbook of Medical Informatics 2000:65-70)

Priority Topics for the Pragmatic Studies Program

• Treatments to prevent the transition from episodic to chronic migraine

• Smoking cessation therapies in high risk persons • Treatments to prevent the transition from episodic to

chronic low back pain • Diagnosis and management of bipolar disorder in

children and adolescents • Treatment strategies for osteoarthritis • Treatments for multiple sclerosis • Treatment strategies for autism spectrum disorder • Treatment of opioid substance abuse

Page 4: Columbia Gorge Patient and Clinician Engagement (PaCE ......original research into practice and to benefit patient care. (Balas and Boren. Yearbook of Medical Informatics 2000:65-70)

We Target Specific, High-Priority Topics

Assessment of Prevention, Diagnosis and Treatment Options

• PCOR Treatment Options in Uterine Fibroids*

Improving Healthcare Systems

• Clinical Trial of a Multifactorial Fall Injury Prevention Strategy in Older

Persons**

• Effectiveness of Transitional Care

Addressing Disparities

• Treatment Options for African Americans and Hispanics/Latinos with

Uncontrolled Asthma

• Obesity Treatment Options Set in Primary Care for Underserved Populations

• Clinical Interventions to Address Hypertension Disparities

* Administered by AHRQ

** Administered by the National Institute on Aging

Page 5: Columbia Gorge Patient and Clinician Engagement (PaCE ......original research into practice and to benefit patient care. (Balas and Boren. Yearbook of Medical Informatics 2000:65-70)

Assessment of Prevention, Diagnosis, and Treatment Options

Seeks to fund investigator-

initiated research that:

• Compares the effectiveness of

two or more options that are

known to be effective but have not

been adequately compared in

previous studies.

• Investigates factors that account

for variation in treatment

outcomes across patient groups.

Portfolio Snapshot

By primary health topic

• 83 Projects • $149 Million Awarded

Page 6: Columbia Gorge Patient and Clinician Engagement (PaCE ......original research into practice and to benefit patient care. (Balas and Boren. Yearbook of Medical Informatics 2000:65-70)

Our National Priorities for Research

Assessment of Prevention, Diagnosis and Treatment Options

Improving Healthcare Systems

Communication & Dissemination Research

Addressing Disparities Accelerating PCOR and

Methodological Research

Page 7: Columbia Gorge Patient and Clinician Engagement (PaCE ......original research into practice and to benefit patient care. (Balas and Boren. Yearbook of Medical Informatics 2000:65-70)

I’ve Got A Question! A Quick Overview of Research &

Creating/Refining Research Questions

Melinda M. Davis, PhD

Margaret Spurlock, MPH

Columbia Gorge PaCE Symposium July 20, 2015

Page 8: Columbia Gorge Patient and Clinician Engagement (PaCE ......original research into practice and to benefit patient care. (Balas and Boren. Yearbook of Medical Informatics 2000:65-70)

Session Objectives

• Orientation – Who are we? – Who are you? Why are you here? – Why are we here?

• Research Overview – What is research? – What can you research? – Why community engagement in research?

• Developing and refining research questions – PICOTS framework – Exercise

Page 9: Columbia Gorge Patient and Clinician Engagement (PaCE ......original research into practice and to benefit patient care. (Balas and Boren. Yearbook of Medical Informatics 2000:65-70)

Who are we?

Melinda Davis, PhD • Rural roots (Columbia

Gorge)

• Passion for community/clinic engaged research in rural settings

• Learning process: Blending research rigor with participatory methods

Margaret Spurlock, MPH

• 2 years in health research

• Previously worked in child welfare advocacy

• Interest in community-based research addressing health disparities

Page 10: Columbia Gorge Patient and Clinician Engagement (PaCE ......original research into practice and to benefit patient care. (Balas and Boren. Yearbook of Medical Informatics 2000:65-70)

Who are you?

• What do you do?

• Why are you here this evening?

• What do you hope to learn from this presentation?

Page 11: Columbia Gorge Patient and Clinician Engagement (PaCE ......original research into practice and to benefit patient care. (Balas and Boren. Yearbook of Medical Informatics 2000:65-70)

Why Are We Here?

• Communities want to solve problems.

• Policy makers and funders want to put resources into programs that are “evidence-based.”

• Which comes first, the chicken or the egg?

Page 12: Columbia Gorge Patient and Clinician Engagement (PaCE ......original research into practice and to benefit patient care. (Balas and Boren. Yearbook of Medical Informatics 2000:65-70)

Research as a Community Asset

Paul McGinnis - ORPRN Newsletter, January 2010

Page 13: Columbia Gorge Patient and Clinician Engagement (PaCE ......original research into practice and to benefit patient care. (Balas and Boren. Yearbook of Medical Informatics 2000:65-70)

Who has collected data for work?

• Is this research?

• Why or why not?

Page 14: Columbia Gorge Patient and Clinician Engagement (PaCE ......original research into practice and to benefit patient care. (Balas and Boren. Yearbook of Medical Informatics 2000:65-70)
Page 15: Columbia Gorge Patient and Clinician Engagement (PaCE ......original research into practice and to benefit patient care. (Balas and Boren. Yearbook of Medical Informatics 2000:65-70)

Characteristics of Research

• Scientific – Systematic, formalized, explicit process – State assumptions, develop plan to study, gain IRB

approval, collect data, analyze, disseminate, evaluate, repeat…

• Clearly defined concepts • Systematic, controlled observations/data

collection – Instruments (Tools) – accurate, precise – Measurement – valid, reliable

• Reporting Results - unbiased, objective

National Research Council (2002), Scientific Research in Education. National Academy Press. Wash DC.

Page 16: Columbia Gorge Patient and Clinician Engagement (PaCE ......original research into practice and to benefit patient care. (Balas and Boren. Yearbook of Medical Informatics 2000:65-70)

Equipoise

Page 17: Columbia Gorge Patient and Clinician Engagement (PaCE ......original research into practice and to benefit patient care. (Balas and Boren. Yearbook of Medical Informatics 2000:65-70)

What Can You Research?

Page 18: Columbia Gorge Patient and Clinician Engagement (PaCE ......original research into practice and to benefit patient care. (Balas and Boren. Yearbook of Medical Informatics 2000:65-70)

Exercise Step 1

• Write down topics/areas that you are interested in exploring through research.

• What were some of your topics of interest?

Page 19: Columbia Gorge Patient and Clinician Engagement (PaCE ......original research into practice and to benefit patient care. (Balas and Boren. Yearbook of Medical Informatics 2000:65-70)

BENCH (animals)

BEDSIDE (humans)

COMMUNITIES

T1

T4

PRACTICE T2,T3

Phases of Research Translation

Modified from Westfall JM, Mold J, Fagnan LJ. JAMA 2007; 297:403-406.

Page 20: Columbia Gorge Patient and Clinician Engagement (PaCE ......original research into practice and to benefit patient care. (Balas and Boren. Yearbook of Medical Informatics 2000:65-70)

Why care about translational research?

• It takes approximately 17 years to turn 14% of original research into practice and to benefit patient care.

(Balas and Boren. Yearbook of Medical Informatics 2000:65-70)

• Review of published studies on quality of care found that only 3 of 5 patients with chronic conditions receive recommended care.

(Schuster M, McGlynn E, Brook R. How good is the quality of health care in the United States? Milbank Quarterly 1998;76:517-63)

Page 21: Columbia Gorge Patient and Clinician Engagement (PaCE ......original research into practice and to benefit patient care. (Balas and Boren. Yearbook of Medical Informatics 2000:65-70)

113 : <1

Where Care Happens (versus where research happens)

1 Green LA, et al. The Ecology of Medical Care Revisited. N Engl J Med 2001; 344(26):2021-5. 2 White KL, Williams TF, Greenberg BG. The ecology of medical care. N Engl J Med 1961;265:885-92.

Primary Care Clinic (e.g., OCH) Academic Health Center (e.g., OHSU)

Page 22: Columbia Gorge Patient and Clinician Engagement (PaCE ......original research into practice and to benefit patient care. (Balas and Boren. Yearbook of Medical Informatics 2000:65-70)

“If we want more evidence-based practice, we need more practice-based evidence.”

- Lawrence W. Green, DrPH

Green LW. From research to “best practices” in other settings and populations. Am J Health Behavior 2001;25:165–78. Green LW et al. Making evidence from research more relevant, useful, and actionable in policy, program planning, and practice: Slips “Twixt Cup and Lip.” Am J Prev Med 2009, 37(6S1): S187-S191

Page 23: Columbia Gorge Patient and Clinician Engagement (PaCE ......original research into practice and to benefit patient care. (Balas and Boren. Yearbook of Medical Informatics 2000:65-70)

Community Engaged Research Spectrum

• Low: Conducting surveys on the street, random phone sampling, posting fliers in the newspaper

• Low/Medium: Convening focus groups or forums at the start or end of a study to assess needs or report back findings

• Medium: Soliciting community to assist in implementing a study designed by a researcher

• High: Participating in bi-directional, collaborative partnership on problem of mutual interest that engages community in all stages of research

UCSF. Collaboration with Community-based Organizations and Agencies: A Guide for UCSF Researchers. http://ctsi.ucsf.edu/files/CE_CARE_Guide_for_Investigators.doc

How would you like to participate in research?

Page 24: Columbia Gorge Patient and Clinician Engagement (PaCE ......original research into practice and to benefit patient care. (Balas and Boren. Yearbook of Medical Informatics 2000:65-70)

Steps in the Research Process

• Step 1 – Identify knowledge gap

• Step 2 – Formulate the research question

• Step 3 – Search for existing information

• Step 4 – Focus the research question

• Step 5 – Design the study

• Step 6 – Refine the specific aims and objectives of the study

Page 25: Columbia Gorge Patient and Clinician Engagement (PaCE ......original research into practice and to benefit patient care. (Balas and Boren. Yearbook of Medical Informatics 2000:65-70)

Key Research Terms Term Definition

Research Question A clear, focused, concise, complex and arguable question around which you center your research.

Specific Aim(s) Roadmap for the project: What is measured and how? What are the controls? How will you interpret data?

Hypothesis (Hypotheses) A tentative statement that proposes a possible explanation to some phenomenon or event.

Page 26: Columbia Gorge Patient and Clinician Engagement (PaCE ......original research into practice and to benefit patient care. (Balas and Boren. Yearbook of Medical Informatics 2000:65-70)

Exercise Step 2

• Smile at your neighbor…get into teams/small groups (2-3 max).

• Share your list of topics, and pick one or two topics to focus on as a team.

• Draft a research question for each topic.

Page 27: Columbia Gorge Patient and Clinician Engagement (PaCE ......original research into practice and to benefit patient care. (Balas and Boren. Yearbook of Medical Informatics 2000:65-70)

Components of the Research Question: PICOTS

Component Definition

Population Who will you engage in your study?

Intervention (exposure) What treatment will you “expose” study participants too?

Comparator What will you use as your control or reference group in relation to the intervention (e.g., usual care, another intervention)?

Outcome What will you measure to assess the impact of your intervention?

Timing How long will you collect data/test the intervention?

Setting Where will the study occur (e.g., hospital, community, school)?

Page 28: Columbia Gorge Patient and Clinician Engagement (PaCE ......original research into practice and to benefit patient care. (Balas and Boren. Yearbook of Medical Informatics 2000:65-70)

Initial Research Question

Does exercise therapy help adolescents with attention deficit hyperactivity disorder?

Intervention (exposure)

Type of Patient

Page 29: Columbia Gorge Patient and Clinician Engagement (PaCE ......original research into practice and to benefit patient care. (Balas and Boren. Yearbook of Medical Informatics 2000:65-70)

Refined Research Question (PICOTS)

Does exercise therapy reduce disruptive behavior at school in adolescents with attention

deficit hyperactivity disorder as compared to adolescents receiving medication alone over a

12 week period?

(I) Intervention

(P) Type of Patient

(O) Outcome and (S) Setting

(C) Comparator

(T) Timing

Page 30: Columbia Gorge Patient and Clinician Engagement (PaCE ......original research into practice and to benefit patient care. (Balas and Boren. Yearbook of Medical Informatics 2000:65-70)

Examples of PICOT Research Questions

Intervention PICOT Question: In adult patients with total hip replacements (Patient population) how effective is pain medication A (Intervention of interest) compared to pain medication B (Comparison intervention) in controlling post operative pain (Outcome) during the perioperative and recovery time?

Etiology PICOT Question: Are kids (P) who have obese adoptive parents (I) at increased risk for obesity (O) compared with kids (P) without obese adoptive parents (C) during the ages of five and 18 (T)?

Prognosis/Prediction PICOT question: Does telelmonitoring blood pressure (I) in urban African Americans with hypertension (P) improve blood pressure control (O) within the six months of initiation of the medication (T)?

Meaning PICOT Question: How do pregnant women (P) newly diagnosed with diabetes (I) perceive reporting their blood sugar levels (O) to their healthcare providers during their pregnancy and six weeks postpartum (T)?

Page 31: Columbia Gorge Patient and Clinician Engagement (PaCE ......original research into practice and to benefit patient care. (Balas and Boren. Yearbook of Medical Informatics 2000:65-70)

Exercise Step 3

• In small teams

– Complete the PICOTS table for one of your research questions.

– Refine your research question based on the PICOTS information.

• What were some of your research questions?

Page 32: Columbia Gorge Patient and Clinician Engagement (PaCE ......original research into practice and to benefit patient care. (Balas and Boren. Yearbook of Medical Informatics 2000:65-70)

A well-formulated research question

• Aids in reducing the work for a literature review

• Aids in development of hypotheses

• Aids in development of a conceptual or theoretical framework

• Aids in clarifying relationships among variables

• Helps you write your grant application!

Page 33: Columbia Gorge Patient and Clinician Engagement (PaCE ......original research into practice and to benefit patient care. (Balas and Boren. Yearbook of Medical Informatics 2000:65-70)

Defining a Good Research Question (FINER Criteria)

• Feasible

• Interesting

• Novel

• Ethical

• Relevant

• Fundability??

Page 34: Columbia Gorge Patient and Clinician Engagement (PaCE ......original research into practice and to benefit patient care. (Balas and Boren. Yearbook of Medical Informatics 2000:65-70)

Comments? Questions?

Page 35: Columbia Gorge Patient and Clinician Engagement (PaCE ......original research into practice and to benefit patient care. (Balas and Boren. Yearbook of Medical Informatics 2000:65-70)

Local Research Engagement Opportunities

Melinda Davis, PhD

Kristen Dillon, MD

Page 36: Columbia Gorge Patient and Clinician Engagement (PaCE ......original research into practice and to benefit patient care. (Balas and Boren. Yearbook of Medical Informatics 2000:65-70)

Key Members of the Study Team

• Principal Investigator (PI)

• Co-Investigators

• Project Manager

• Research Assistants

• Statistician

• Advisory Board Members

• Other Roles?

Community Partners?

Page 37: Columbia Gorge Patient and Clinician Engagement (PaCE ......original research into practice and to benefit patient care. (Balas and Boren. Yearbook of Medical Informatics 2000:65-70)

Projects and Opportunities

• PCORI Tier II – Become a research ambassador for the network

(name is ???) – Serve on the research network board

• Look for opportunities to participate in “Finding the Right FIT”

• Sign up to serve… – As a member on a PCORI Review – As member of a study patient advisory board or

research council…. – Find investigator in your area of interest – ask…

Page 38: Columbia Gorge Patient and Clinician Engagement (PaCE ......original research into practice and to benefit patient care. (Balas and Boren. Yearbook of Medical Informatics 2000:65-70)

Academic-Community-Research Collaborations Require…

• Learning a new language (for both partners)!

• Recognizing complimentary expertise

• Developing trust, rapport

• Strategizing (and at times compromise) so both partners can achieve their goals

Page 39: Columbia Gorge Patient and Clinician Engagement (PaCE ......original research into practice and to benefit patient care. (Balas and Boren. Yearbook of Medical Informatics 2000:65-70)

Thanks! Contact us for more information!

Connecting Research to Real Life Core Team

• Susan Lowe

• Margaret Spurlock

• Kitsy Stanley

• Melinda Davis

• Kristen Dillon